63 Months: The Average Wait for Autism Services Through Medicaid Waivers
More than five years. That is the national average wait for an autism-specific Medicaid waiver, against 37 months for intellectual and developmental disability waivers. Autistic people wait longer than anyone else being counted.
Almost no family has these three facts in writing, and all three are knowable. Your placement date establishes how long you have been waiting, which matters in every appeal. Your priority group determines whether you move at all. And asking in writing creates a dated record that a phone conversation does not. If the agency cannot tell you your position, ask them to say that in writing too, because a system that cannot report its own queue is a finding worth putting in front of a board.
600K
People waiting
Over 600,000 people were on Medicaid HCBS waiting or interest lists in 2025, a 14% increase from 2024. Forty one states maintain a list.
74% have I/DD
Nearly three quarters of everyone on a waiver waiting list has an intellectual or developmental disability. This is not a general long term care problem with a disability component. It is a disability problem.
37 months for I/DD
The I/DD waiver average, against 32 months across all populations. Autism waivers at 63 months sit at nearly double the I/DD figure and nearly double the overall average.
6
States, half the list
Six states do not screen for eligibility on any waiting list and account for more than half of all people waiting, about 325,000. Their lists include people who may not qualify.
49 months without screening
In states that do not screen for eligibility, the average I/DD wait is 49 months, against 32 months in states that do. Unscreened lists are longer and less meaningful.
Michigan’s cap
Michigan’s Habilitation Supports Waiver holds 7,481 slots at any given point, allotted region by region. Michigan publishes no statewide wait figure families can check.
KFF’s November 2025 survey, in numbers
We applied when he was sixteen because everyone told us to apply early. He turned twenty one and left school with nothing in place. The call came the following spring. Five years is not a wait. It is the entire transition, start to finish, and we spent all of it on a list.
Work the list you are actually on
Do these in order
- 1Confirm in writing that you are on a list, the date you were placed on it, and which waiver it is for.
- 2Ask which priority group your family member falls into and ask that it be documented in the file.
- 3If your child is on the Children’s Waiver, invoke the transition priority at least six months before the birthday that ends eligibility.
- 4If the situation changes, submit the change in writing immediately. High risk of institutional placement is a named priority and it is a status, not a permanent label.
- 5Ask what services are available while waiting, including Medicaid state plan services, Home Help, and CMHSP services outside the waiver.
- 6If you are told you are ineligible rather than waiting, get that in writing and file for a Medicaid fair hearing.
Build the file that moves you up
- The date you first applied, with proof
- The level of care determination and its result
- A physician letter naming round the clock supervision needs
- Documentation of any risk of institutional placement
- Any private duty nursing need, if the person is 21 or older
- The Children’s Waiver end date, if applicable
- An hour by hour log of a typical week, kept for two weeks
- Every call you have made, with dates, names, and what you were told
Nothing on this list shortens a queue by itself. Together they determine which queue you are in, and that is the part you control.
A father in Washtenaw County did exactly what everyone tells you to do. He applied when his son was sixteen. The call came the spring after his son turned twenty one, which is to say it came after the entire transition it was supposed to help with had already happened.
KFF completed its twenty third annual survey of Medicaid home care officials between April and July of 2025 and published the results in November. Every state except Florida responded. If you want one document that explains why your family’s experience feels the way it does, that is the one.
The number, and why it is the number
Autism-specific Medicaid waivers carry a national average wait of 63 months. Waivers targeting intellectual and developmental disabilities average 37 months. The average across all populations is 32 months.
Sixty three months is five years and three months. It is longer than high school. It is nearly twice the I/DD average, and the I/DD category already contains a great many autistic people, which means the gap between autism-specific waivers and everything else is not a rounding artifact. Autistic people wait longer than any other group KFF tracks.
I have been trying to write a version of this paragraph that is not angry and I cannot do it, so I will just say the thing. The population with the earliest identifiable need, the most predictable trajectory, and the most documented service requirement waits longest. That is not a system under strain. That is a system with a sorting mechanism, and this is where it sorts us.
The scale underneath it
Over 600,000 people were on HCBS waiting or interest lists in 2025, up 14% from 2024. Forty one states maintain a list. 74% of the people on those lists have intellectual or developmental disabilities.
That last figure deserves emphasis, because HCBS waiting lists get discussed as a long term care problem that happens to include disabled people. Three quarters of the people waiting have I/DD. It is a disability problem that happens to sit inside a long term care program.
This cuts both ways, and I want to be fair about it. Advocates sometimes quote the 600,000 as though every person on it is eligible and waiting for a slot, which is not quite true. Officials sometimes dismiss the whole figure as inflated by unscreened lists, which is also not true, because a state can suppress its list simply by making people apply for something they will be denied. Both moves are convenient. The honest read is that 600,000 is a ceiling, the eligible-and-waiting number is meaningfully smaller, and nobody can tell you what it is, which is itself the scandal.
Why autism waits longer
KFF does not explain the gap, so what follows is my reading rather than a finding, and I will flag it as such.
Autism-specific waivers tend to be small, narrowly targeted programs. States created them to serve children with autism, often with intensive behavioral services attached, and often with tight enrollment caps because the per-person cost of the service array is high. A small capped program with high demand produces long waits arithmetically.
There is also a definitional squeeze. An autistic person with an intellectual disability may qualify for a broader I/DD waiver with more slots. An autistic person without one may find that the autism-specific waiver is the only door, and it is the narrowest door in the building. That is the group that sits at 63 months.
And there is timing. Autism is typically identified early, which means families join a queue early, which is supposed to be an advantage and functions as a trap. You spend the wait during exactly the years when school is providing something, and you arrive at the front of the line around the time school ends and the real need begins.
What Michigan does and does not tell you
Michigan’s Habilitation Supports Waiver is capped at 7,481 slots at any given point in the year, allotted by PIHP region. There are three named priority groups: adults 21 and older who require private duty nursing, children transitioning off the Children’s Waiver, and people at high risk of institutional placement.
What Michigan does not publish, as far as I can find, is a statewide count of people waiting for an HSW slot or how long they have waited. Families are told to ask their CMHSP whether the region is holding a list. That is not the same as a number you can check, cite, or argue with.
I think that opacity is worth naming as its own problem. Every advocacy argument in this space runs on numbers. Louisiana could not have redesigned its list without first assessing more than 12,000 people. Connecticut’s 2023 legislation required annual reporting on reduction precisely because reporting creates pressure. A state that does not publish its queue has made it very difficult for anyone to prove the queue is a problem.
What actually moves a family up
I want to be honest that none of this shortens the line. What it does is determine which line you are in, and that is not nothing.
Get your placement date in writing. Not the date you called. The date the agency recorded you. That date is the foundation of every argument you will make later, and a surprising number of families discover it is not what they assumed.
Invoke the priority you have. The three Michigan priorities are specific and they are written down. If your adult child needs private duty nursing, say so in writing. If your child is on the Children’s Waiver, start the transition process at seventeen, because that priority expires unused. If circumstances have deteriorated to where institutional placement is a real risk, document that immediately, because it is a status the system recognizes and it is the fastest mover on the list.
Do not wait empty. The waiver is not the only thing available. Medicaid state plan services, Home Help, and CMHSP services outside the waiver exist and are frequently under-offered. Ask what your family member can receive today while waiting, and ask for the answer in writing, because a written no is appealable and a verbal no is nothing.
Refuse the framing. Five years is not a wait. A wait implies a service that is coming. Five years is a period during which your family provides the care the state agreed your family member needs and does not fund. Say it that way in public comment. Say it that way to legislators. Sixty three months is not a queue length. It is an unpaid invoice, and somebody should have to look at it.